[Treatment] somniosus - Therapy Thread [new user looking for initial settings advice]

[somniosus]

This is really long, so TL;DR:
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.


Background/symptoms: 24 years old, no known risk factors except possibly neck/tongue abnormalities related to a connective tissue disorder. (Hypermobile Ehlers-Danlos Syndrome. There's a bit of data indicating that hEDS might indeed be a risk factor for sleep apnea, probably because of how it can affect our soft tissues, but it's far from conclusive.) Primary symptoms are excessive fatigue/daytime sleepiness, unrefreshing sleep, frequent awakenings. I don't really snore. I grind my teeth quite hard (and wear a mouth guard for this since it was wearing down my teeth), and apparently I talk in my sleep, and more notably I often yell or scream quite loudly. This has grown more frequent and severe over the years. Many/most nights I have nightmares, and the talking/screaming seems to be directly connected to the events of my dreams. I don't think they're night terrors, though I don't know for sure. I live with my parents and they're able to wake me from the screaming without incident, and I can usually recall the dream. I don't sleepwalk or anything like that. (No idea if the screaming stuff is actually related to my apnea, but my doctor seems concerned by it and thinks it's connected.)

Previous diagnosis: I was initially diagnosed a few years ago, in late 2020, after a sleep study. It went very poorly and I slept for maybe two hours total (and not all at once), but I guess it was enough for a diagnosis. Unfortunately I don't have the results from back then and am having some trouble trying to get them, but I do remember that my apnea was considered moderate. I don't recall specifics about the types of events I was having (eg. how many apneas vs hypopneas, what types of apneas, any RERAs or not....).

I attempted treatment for a while (with a Dreamstation) but there were some other life issues I was dealing with, and I utterly failed at being compliant, and had to return it after a few months because I couldn't keep up with the insurance requirements. (And then the Dreamstation was recalled. I don't have any reason to think there were issues with the specific machine I used; I just thought it was a funny coincidence that the recall happened shortly after I stopped treatment.) I sort of put the apnea thing on the back burner; I had a lot of other health problems then (turned out to be mostly related to the hEDS which I was later diagnosed with) and I wasn't super confident in my apnea diagnosis based on the poor quality of the sleep study. (This doesn't necessarily make sense, but it's how I rationalized things at the time.)

Recent results: Fast-forward to now and I'm in a much more stable place, and feel like it's finally time to return to the apnea thing and hopefully address my fatigue issues, which remain substantial. I wanted to 'reconfirm' the diagnosis, since it's been several years. I got an at-home test; I'm aware this is far from ideal, but it's better than nothing. Most of my events were hypopneas, but I did have a fair few apneas too, about 80% of which were marked as 'central/mixed', with only a handful of OAs. My hypopneas didn't usually reach 4% desaturation, so my AHI was mild and my RDI was moderate. Obviously RERAs were not recorded.

OSCAR info from last time: The 'central/mixed' apneas are a bit weird; I don't have any known condition that would cause them. I don't know if they showed up in my initial study or not. When I tried treatment for the first time, I used OSCAR to monitor things, though unfortunately I've since lost the data, and I also didn't really make any changes to settings during my treatment… But I do remember that my AHI was usually in the 20s, with the majority of events being 'clear airway' apneas and hypopneas (about a 50/50 split). This is a bit different from my recent study, which did have some 'central/mixed' apneas, but about three times as many hypopneas. Maybe some of the CAs back then were treatment-induced, but they were present from the very start and didn't get substantially better or worse. It remains to be seen if they will be an issue with treatment this time around; if they do show up again with the same frequency, I'm hoping I'll be able to reduce them by finding the proper settings. (And also by being more compliant/consistent with treatment, which I definitely was not last time.)

I do regret not being more proactive in trying to communicate with the people who managed my treatment. My AHI was bad with the initial settings (which I think were just defaults), and maybe it would've been easier to comply if we'd found something more effective. At one point early on they raised the minimum pressure a bit, but after that we didn't have any further contact, and no other changes were made. I tried to call them only once or twice and never got a response; I should've been more persistent. Or I should've just tweaked the settings myself.

This time after getting my prescription I was able to purchase my own device, so I can adjust the settings as I please.


Seeking advice on initial settings: So with all that being said, I'd appreciate some advice on what settings I should start with, since I didn't have a titration study. (I didn't have one after the initial sleep study either; it was never recommended or even mentioned to me as a possibility.) I have a ResMed AirSense 11 AutoSet. I'm looking for ideas on min/max pressure range, EPR, ramp, that kind of thing. I could just use the machine defaults for all of those, but figured I'd ask first to see if there are any other ideas on better starting values. Presumably things won't be perfect from the start, so I'll follow up as needed with OSCAR data.

The only things I still need to get are an SD card for OSCAR, and a mask. I plan to order those today or tomorrow; I can get started with treatment once they arrive. I know from last time that I hate larger/bulkier masks, and I'm a side sleeper who tends to move around a lot. I anticipate needing to try out several different kinds of masks before finding one that works well, but a nasal cradle/cushion or pillows mask seems ideal, so I'll start with those—maybe I'll get lucky and find a good fit early on.

Edited to add: somehow forgot to include this, then remembered immediately after posting…. My neck is very hypermobile and I have a lot of neck pain/other issues because of it, so when I'm asleep I often wear a soft cervical collar. I just need to get a new one, because the velcro recently stopped working on the one I have. I wasn't wearing it during either of my studies so I'm unsure how it might affect my apnea. It hasn't improved my sleep-related symptoms at all, but maybe it'll help with treatment. Figured I'd mention that since I know it's sometimes recommended.

Thanks for your time, and I apologize for the length. I always want to provide as much relevant information as possible, but I've never been good at doing that in a concise way. So I'll repeat my TL;DR from above:
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.

[G. Szabo]

I'm looking for ideas on min/max pressure range, EPR, ramp, that kind of thing. 

I would start with the follwing settings: 
Pressure minimum/maximum: 7/14. (cm) 
EPR=2 full time
Standar mode
Ramp off. 
Once you have your card, you should post the outcome.

[somniosus]

TL;DR:
First three nights of use; lost detailed data from first night but shouldn't happen again. Using a ResMed P30i mask. Not using the humidifier/heated tubing. Feel like it's going well so far but there are clearly a few issues that need to be addressed. Ordering some things to help with probable mouth leaks; in the meantime, probably going to try different nasal pillows size, but will keep other settings the same unless advised to change something. Happy to provide additional screenshots/info.


Took a lot longer than expected, but I finally started. Here are my first three days. Some misc. notes/thoughts:

• Using a ResMed P30i mask. Small size frame, small size pillows. I think the frame is the right size. Small pillows initially felt right but I might try the mediums and see how that goes.
  
• I only have summary data for the first day because my Mac was giving me issues with the SD card and I needed to erase + reformat it. Figured out what the problem was and it shouldn't happen again.
  
• I disabled CSR from the event flags to save a small bit of space, and turned off the unrequested graphs so there wasn't a super long scrollbar. The disabled session from the second night was a very short session where I was awake and adjusting the mask so it's not relevant to the results.
  
• The lack of leaks on the first day (compared to substantial leaks on the following) seems to be accurate and not some sort of recording error; myAir also shows no leaks for the first day but lots of leaks for the second and third. Unsure if that's because of my mouth opening, or because of actual mask leaks, or both. I do recall a lot more drooling from the second and third days, and according to my mom I was talking/yelling in my sleep, so it's likely at least partially mouth leaks. I'm ordering a few different things to try (strap, tape, etc.).
  
• The Climate Control/Humidifier/Temperature info from settings is irrelevant/inaccurate. I'm not using the water tub (I have the end cap/side cover attached instead) and am using the basic SlimLine tubing so there's nothing happening there. I may need to start using the humidifier eventually, but it feels ok so far and cleaning/maintenance is much easier so for now I'll continue to go without it.
  
• After the second night I changed the EPR from 2 to 1 because it didn't feel like I needed it that high, and I hoped it might reduce the CAs. With only one night of data to look at after the change, it's really hard to tell what effects it had (both positive and negative), if any. I'm open to setting it back to 2 or turning it off altogether.
  
• I chose AutoSet for Her because my sex is female, but I'm open to trying the normal AutoSet instead.
  
• I didn't use the CPAP every single time I slept; on the first two days I ended up falling asleep for a while in the morning after taking it off. I'd think I was ready to be awake for the day, but then fall asleep again a few minutes later. Happens a lot. Last night was worse; I slept without it both before and after the period recorded in the data, but it's more because I was generally out of sorts, having lots of nightmares and moving around, wet the bed (lifelong problem for me; happens less frequently than it used to but more often than I'd like), etc. And I just forgot to put it back on after getting up to change my sheets. So it's not really related to the CPAP itself. I'll work on putting it back on in the mornings until I'm certain I'm ready to be up, but so far I'm pleased with my compliance, especially compared to my abysmal first try a few years ago.
  
• No changes in my fatigue levels but I wasn't expecting it to help immediately anyways. And I have other health issues that make me tired. At least it's not making me feel any worse!
  

So that's where I'm at. My current plan is to order some things to help with mouth leaks, and until those arrive, I'll keep everything else the same unless recommended otherwise. Except I might try out the medium pillows for a night and see if that changes anything. The leaks are the most important thing to address right now, but I'm open to changing any settings if anyone has any advice. Please let me know if you want to see different graphs or zoomed in data at certain points. Or have any other questions that I haven't addressed. Etc. Once again I apologize for the long post.

I don't know what to make of the fact that most of my events so far are CAs. Some of them might be treatment-induced but they did show up on the study too, so presumably it's not just that. At least the treatment seems to be more-or-less managing my hypopneas so far. (Unless they're not being recorded properly for some reason.) Overall it feels like it's going much better than my first time around, both in terms of comfort/compliance and my AHI. (Which isn't saying much since that first time went so poorly, but still.) But it's only been three days so it's hard to draw many conclusions.